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Author Topic: 4th week of Harvoni....Harder Than It Should be!  (Read 14959 times)

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Offline Boulan

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  • Posts: 5
4th week of Harvoni....Harder Than It Should be!
« on: July 02, 2015, 12:09:18 pm »
I was diagnosed with Hep C the day after I lost my job in December of 2014.
My Gastro doc immediately prescribed Harvoni as I have stage 4 fibrosis also.
My insurance company promptly denied my medication. I was expecting this after reading all the stories on this forum.
My doctor appealed their decision and the insurance company eventually gave in. I was just about ready to go to my local State Insurance Dept. and Attorney General with this.
I received my first 30 day supply of Harvoni June 3rd. and have been on it for 3 weeks now.
Two weeks ago, my insurance company (Premera) sent me a letter explaining I had to change pharmacys. I was setup with Premiere Pharmacy and they wanted me to switch to Walgreens Speciality Pharmacy. I view this as another attempt by this insurance company, to make this miricle dug unavailable to me!
I called Walgreens and they didn't know who I was..... eventualy after 4 or 5 calls, I got setup with Walgreens and expected my next months supply to come from them.
4 days ago, I get a call from my original pharmacy (Premiere) telling me they will ship out the next month and the insurance company has already paid for it. I was to receive this yesterday (July 1st.) via Fedex. I took the day off work because I have to sign for this $30K bottle of pills. Fedex never showed up! I called the pharmacy and they said they shipped it out 2 day via Fedex on Monday and it should have been here yesterday.
I called Fedex this morning (July 2nd.) and explained the situation. Asked them if I should take another day off work and sit here again all frickin day!
This whole ordeal is way harder than it has to be! I think everybody is freaking because of the cost.
I am sorry most of you are going through the same thing I am. It is a travesty we have to do this to save our lives.. Bless you all!

Offline mcphe66

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Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #1 on: July 02, 2015, 05:38:16 pm »
I will be praying for you that all will work well with receiving your medication on time with no issues. My insurance approved me for 12 weeks of Harvoni. However, I informed my Doctor's staff that I had taken Interferon in 1997 but it didn't work. So, now I have to take an additional 12 weeks of the medication. Please pray for me that my insurance will cover the additional 12 weeks. Are you having any side affects? After one week I haven't experienced any. Sometimes I feel bloated but don't know if that's one of the side affects. I love running so, I hope I can still run. God Bless you.

Offline Boulan

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Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #2 on: July 02, 2015, 05:49:24 pm »
Thanks mcphe66! Have had a few side affects. Little sleepy sometimes and my joints ache, but I have RA also.
My next months supply of Harvoni FINALLY arrived today. Went and had my first blood test today too.
I used to run marathons until my feet started having problems due to arthritis.
Was VERY hard for me to accept that. Was on my way to running Boston. Might have had Hep C at that time too. Think I have had it for 35 years.
May god bless you too! ;)

Offline mcphe66

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Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #3 on: July 02, 2015, 07:48:21 pm »
I have been infected for at least 35 years as well. The Lord had blessed me all of these years and kept me out of harms way. I am not running at a marathon level. I am trying for a 5k later this year. My body aches as well but that's from body wear and year. I will keep in contact and let you know of my progress with the treatment and please do the same for me. God bless

Offline Corey

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  • Posts: 31
Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #4 on: July 06, 2015, 08:29:09 am »
For others facing this issue, I'll offer this up:  I am working with a local specialty pharmacy.  They have been great.  My insurance company encouraged me to use a mail order pharmacy and I was robo called repeatedly by the mail order guys with a strong suggestion that I must use them.  In my state, your insurance company cannot mandate you to use a particular pharmacy.  Might be worth checking out.

The local guys have been great and I won't give them up.  They will mail the drugs to me but frankly, I prefer to go pick them up so I don't waste a day sitting around for the delivery service.   They contacted Gilead and got a co-pay card that covered my high deductible.  They have advocated on my behalf and have also helped get my extra 12 week approval in order. 

Hope all goes smoothly with your remaining treatment. 

Offline New York Girl

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Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #5 on: July 06, 2015, 10:08:01 am »
Corey, that's really interesting about the pharmacy - what state are you in?

Offline Corey

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Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #6 on: July 08, 2015, 09:27:34 pm »
Maine

Offline sapphire101

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  • Posts: 238
  • "Stop worrying and start living"
Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #7 on: July 08, 2015, 10:37:26 pm »
That is so interesting that in Maine you can not be mandated to use a particular pharmacy. If you have any links to this Corey please send them - I would like to research this more.
The pharmacy hoops were some of the toughest barriers to negotiate, that is after the first hoop on fire of getting my insurance to approve.
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline Boulan

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  • Posts: 5
Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #8 on: July 12, 2015, 09:27:19 am »
Got the results back from my first blood test..... VL undetectable!
Guess I found out I had Hep C at the right time in history!
I really wish Harvoni would become available to EVERYBODY that needs it! We could eradicate this awful disease!

VL before treatment was 3.8 Million

Offline Else

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  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #9 on: July 19, 2015, 02:53:34 pm »
Got the results back from my first blood test..... VL undetectable!
Guess I found out I had Hep C at the right time in history!
I really wish Harvoni would become available to EVERYBODY that needs it! We could eradicate this awful disease!

VL before treatment was 3.8 Million

You started Harvoni June 3rd and you're VL undetectable as of July 12th?!?!  Wow!  That is stupendous.  Congratulations on your successful treatment and regaining your health.  ;D
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline mcphe66

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  • Posts: 5
Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #10 on: July 24, 2015, 09:06:13 pm »
That's great news. I just got my 4 weeks results and it was Undetected as well. I started out at 8,967,391 IU/Mil and now it is less than 15 IU/Ml. I am giving all the praises to God. My prayers are for all of us that are infected and that the treatment will cure us all. God bless

Offline pjggibson

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Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #11 on: July 24, 2015, 11:20:03 pm »
Got the results back from my first blood test..... VL undetectable!
Guess I found out I had Hep C at the right time in history!
I really wish Harvoni would become available to EVERYBODY that needs it! We could eradicate this awful disease!

VL before treatment was 3.8 Million

Absolutely Amazing, took me 8 weeks.

PJG

Offline Gary

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  • Posts: 6
Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #12 on: July 25, 2015, 12:10:15 pm »
First post, I have completed the 24 week treatment with Harvoni. I had done 3 previous treatments( peg and ribo ) in the early 2000's without success. From week 4 there was no viral load and still it's not detectable. My final lab will be Aug. 20th.
  I got on the Gilead copayment program (coupon on website) and the insurance company was Encompass. The first bottle was sent to the doctors office, the rest were sent directly to me, with no signature required. did have to provide a previous liver biopsy I had done about 8 years earlier.
  Looking back, I feel like the only side effect I suffered was a bit of depression, seemed unusually sensitive. The only way I realized this was that I am now back to my old self and do not feel remotely depressed, don't know if this is common, but this is how it affected me. Good luck, Gary

Offline Corey

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  • Posts: 31
Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #13 on: July 25, 2015, 03:12:41 pm »
Congratulations on completing the treatment.  Awesome news on the results and I'll keep my fingers crossed that the August 20th results will be all clear!

I am into Bottle #6 and counting down the days. 

WRT side effects, I have been a bit depressed but since I have a history of it, I don't know whether to attribute is to the drugs. 

Offline Gary

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  • Posts: 6
Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #14 on: July 26, 2015, 12:01:52 pm »
Last bottle! Great, and thanks for your good wishes , after all these years it seems like a miracle, hope you and I and everyone affected share the same good news on their final lab.

Offline Lynn K

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  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #15 on: July 26, 2015, 12:44:46 pm »
Hi Gary and welcome.

You said you had a biopsy a few years back what was your result?

I also did not respond to previous treatment. I had interferon monotherapy once and two tries with interferon Ribavirin I also relapsed last year after treating with Sovaldi and Olysio for 12 weeks. I was diagnosed with cirrhosis in Jan 2008

I started a 24 week Harvoni treatment in November to which we added riba later so that was for 15 weeks of the 24. I finished treatment on May 4 and when I was tested at 4 weeks post treatment I was still not detected. I will be doing my 12 week post treatment tomorrow. Hopefully I will still be not detected which will mean I am finally cured of hep c.

Good luck on treatment and may you be free of hep c forever soon
Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline dragonslayer

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  • Posts: 873
Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #16 on: July 26, 2015, 02:21:53 pm »
Lynn, how soon will you be able to see your results after tomorrow's draw?  Can't wait to hear the good news!!!!!!!
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Bituman

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  • Posts: 157
Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #17 on: July 26, 2015, 03:54:10 pm »
Lynn, how soon will you be able to see your results after tomorrow's draw?  Can't wait to hear the good news!!!!!!!

What he said Lynn.  Will be watching your posts closely looking for good news.  Good luck! 
Bob
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline Gary

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  • Posts: 6
Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #18 on: July 26, 2015, 07:09:16 pm »
Lynn, It seems we had very similar experiences with previous treatments, I started with a clinical trial of interferon, then interferon and ribovirin, twice. Did not do any Sovaldi.
   As far as my biopsy is concerned , it showed mild cirrhosis , I got the results from around 2008 , and also a photo of my liver taken during a gall bladder surgery later, showed them to the doc. all he said was, "all things considered it didn't look that bad, some mild scarring but overall not extremely bad.
  Anyway, will find out soon if everything "took" . All you guys and girls, hang in there, I think we are finally about to beat this thing! Stay strong!

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #19 on: July 26, 2015, 10:45:14 pm »
Hi Gary
I was being tracked closely by my doctor having a biopsy every 5 years. On my last biopsy in Jan 2008 I was diagnosed with F4 cirrhosis they called it early cirrhosis at the time.

But over time my platelet counts fell to the 80 to 90 range 150 being normal because my spleen is enlarged because of cirrhosis and holding on to my platelets. Also I had several upper endoscopies after the cirrhosis diagnosis and in 2012 I was found to have esophageal varicies that required banding so now I have an upper endoscopy every year to check for re-occurrence.

I also have some lower leg swelling called pitting edema and a small amount of ascities so I have been taking a diuretic since 2012 for that.

Thanks for the good luck wishes Paul and Bob if the past practices hold I will have my liver function test and CBC back in a day or 2 and hopefully have the test for the virus back by Friday. Going camping so I may be off the grid. If you don't hear from me by Friday look for a post or 3 on Monday!

Best to all
Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline chino1969

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  • Posts: 117
Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #20 on: July 30, 2015, 02:08:21 pm »
Hi Gary
I was being tracked closely by my doctor having a biopsy every 5 years. On my last biopsy in Jan 2008 I was diagnosed with F4 cirrhosis they called it early cirrhosis at the time.

But over time my platelet counts fell to the 80 to 90 range 150 being normal because my spleen is enlarged because of cirrhosis and holding on to my platelets. Also I had several upper endoscopies after the cirrhosis diagnosis and in 2012 I was found to have esophageal varicies that required banding so now I have an upper endoscopy every year to check for re-occurrence.

I also have some lower leg swelling called pitting edema and a small amount of ascities so I have been taking a diuretic since 2012 for that.

Thanks for the good luck wishes Paul and Bob if the past practices hold I will have my liver function test and CBC back in a day or 2 and hopefully have the test for the virus back by Friday. Going camping so I may be off the grid. If you don't hear from me by Friday look for a post or 3 on Monday!

Best to all
Lynn

Lynn,
The best of luck.  I'm not far behind you, almost similar stories.

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: 4th week of Harvoni....Harder Than It Should be!
« Reply #21 on: July 30, 2015, 09:01:35 pm »
posted a couple of other places but I just got my 12 week post results hep c not detected I am cured!
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

 


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